Sharing Cancer’s Pain

DANA POINT — Seven-year-old Laura Rutherford used a black marker to draw a stick-figure portrait of her family.

“That’s mom in a dress,” she said.

“Give her hair,” insisted her sister, Sara, 13.

“She doesn’t have hair,” Laura argued.

“She has some,” Sara said, and Laura drew stubbles atop the stick figure’s head.

Next Laura was asked to sketch her happiest moment. Laura drew another stick figure, this time with long curls down its face and neck.

“This is when my mom had hair,” she said.

Laura and Sara have been dealing with their mother’s breast cancer the best way they know how. They have a neon green swizzle stick that came out of their mother’s last pina colada before chemotherapy. They wave it as they say a prayer to kill the cancer cells. They have designated blue M&M;’s as cancer candy. They pick them out of the bag and give them to their mother as “chemo” pills.

But most recently, they have been sharing their experiences and feelings with other children whose parents have cancer. About 400 kids ranging in age from 3-18 meet once a month in Orange County to share their fears, their thoughts or to cry knowing that somebody else understands.

Kids Konnected began four years ago in Irvine with six children and a psychologist. It has expanded nationwide to eight branches, including ones in Fullerton and Dana Point and others as far away as Oklahoma, Connecticut, Illinois and Florida.

The group has a 24-hour help line, a Web site, a newsletter, social activities, summer trips and monthly meetings.

Laura and Sara have attended three sessions in Dana Point, the newest chapter. Sara said the meetings are helping her cope with the problems that having a parent with cancer may bring to a family--the stress, the uncertainty, the strange ways parents may act.

“You get your feelings out, and you talk about things,” she said.

“And it’s fun to color,” her younger sister added.

Outside the meeting, their mother waited with the other parents, who discussed chemotherapy and changing diapers.

“At home I don’t wear this,” Angel Rutherford said of the plaid bandanna on her head. “We don’t hide anything. They’ve seen me bald. They’ve seen my mastectomy. They ask me about chemo. My house is not a sad house. We joke.”

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But that’s not to say cancer is always a joking matter. On their way to the group meeting this month, Laura was feeling set apart from other children.

“My daughter said, ‘Mommy, I’m the only one at school whose mom has cancer,’ ” said Angel Rutherford, who lives in Aliso Viejo. “And I asked, ‘Why do you think that?’ She said, ‘Because they’re all happy.’ Thank goodness we were on our way here.”

Fran Baumgarten, a clinical psychologist in Newport Beach, said it is crucial for families to discuss the disease. Cancer affects an entire family, not just the person that has it, she said.

“It is very important for kids to have a place to go to express their feelings,” Baumgarten said. “When you’re a youngster, and your parent has cancer, the whole world falls apart. The kids get scared and frightened. Their support system isn’t there.”

That’s where Kids Konnected fits in, said the psychologist, who counsels children at the meetings and who selects therapists for the group.

“They have someone to talk to and somewhere to go,” she said. “It is probably the only time in the entire month that they don’t have to pretend that everything is OK. It’s kind of like getting home at night and slipping on your ripped jeans. They can come in and express how they feel.”

Cancer can often be difficult for children to understand.

Four years ago, when Robyn Wagner-Holtz of Mission Viejo told her 11-year-old son, Jon, that she had cancer and had to have a breast removed, he told her he was sorry she was sad and went outside to play.

He thought it was like the flu, but instead of getting a fever, you cry. Jon realized the severity of the disease when his mother came back from the hospital wrapped in gauze, with tubes coming out of her.

“I was mad at God,” he said. “I wanted to be the one who had cancer, not her.”

Then came the embarrassment and the shame of being embarrassed.

His mother began chemotherapy and lost her hair. Moving to a new city in the fifth grade was difficult enough, Jon said, but being the new kid with the bald mom was traumatic. His mother sent him to a psychologist, which lasted one visit. It just didn’t feel right.

Jon wanted to be a normal kid, and to do that, he needed to be around children who were experiencing similar pain.

His mother’s surgeon was president of the Orange County chapter of the Susan G. Koman Breast Cancer Foundation, which raises money for research. Dr. Dava Gerard helped Jon draft a grant proposal for a kids support group. The foundation loved his idea, and Jon is now the 15-year-old CEO of Kids Konnected.

“It provides these kids a very safe place to air some of those very scary feelings,” Gerard said. “It’s not a remorse atmosphere. It’s a mixture of serious stuff to kids horsing around, but you do get to some tough stuff. These children are really concerned about losing a parent.”

Jon said the difference between Kids Konnected and other support groups is the youth leadership.

“Kids are running it for kids,” he said, “not adults perceiving what we need.”

When the children interview adult counselors for the groups, they usually meet in pizza parlors. If the prospective group leader wears a suit or brings a briefcase, “See ya,” Jon said. “They don’t even get an interview.”

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Kirk Andrews, counselor for the Dana Point Kids Konnected, sat cross-legged on the floor, sucking on a hard candy, at this month’s meeting. After gathering the dozen children into a circle, he asked them to rate the month. If they reached as high as they could that meant they had a good month “like birthday parties all the time.” If they had a bad month they reached to the ground.

Passing around a miniature plastic football, which allows the child holding it to talk, the kids discussed their nightmares and the love and concern they share for their parents.

“What is cancer?” Andrews asked.

“It’s a bad sickness,” Laura Rutherford blurted from across the circle.

“What can help?” Andrews asked.

“The drugs my mom takes,” Laura said.

“Chemo,” said Danielle Primmer, 14.

Danielle was 6 years old and living in Capistrano Beach when her parents sat down at the kitchen table to say her mother had breast cancer. She didn’t understand it like she does now, more than four years after her mother died.

“I didn’t know what it was, but I knew it was bad because they were crying,” she said. Asked after the meeting when her mother died, Danielle said, “Five years ago this August.”

The anniversary still brings tears, as do holidays and her mother’s birthday.

“I really just wanted her to see my brother and I grow up,” she said.

Two months after their mother’s death, Danielle and her brother began attending Kids Konnected.

“I thought no one else understood,” Danielle said. “Then I realized these people are just like me, and it’s better to have someone to talk to.”

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Kids Konnected Meetings

* 7 p.m. June 2, Marriott Laguna Cliffs Resort at Dana Point, 25135 Street of the Park Lantern.

* 7 p.m. June 10, Irvine Marriott, 18000 Von Karman Ave.

* 7 p.m. June 23 Fullerton Marriott, 2701 E. Nutwood Ave.

To contact the group, call (714) 380-4334 or (800) 899-2866 or e-mail [email protected]. The group’s Web site is www.komenkids.org.